Hidradenitis suppurativa is a chronic autoinflammatory condition which, although not fatal, is extremely painful and severely reduces the quality of life. HS remission is practically unheard of, and many are ready to accept even the slightest methods that bring relief. Unfortunately, not much research has been aimed at understanding HS in the medical community as well as the lack of awareness of Hidradenitis suppurativa in society.
Even doctors themselves, do not always recognize the symptoms, which leaves patients left undiagnosed or misdiagnosed. Some claim it is genetic, others say it is environmental. Truth be told, there simply isn’t much research on Hidradenitis suppurativa. Some patients suffer from HS on its own, such as myself, whilst others have an addition of other conditions that either come prior to or after their HS. It can affect anyone, regardless of sex, ethnicity, or lifestyle.
Life with HS
I have had HS since the age of 10 and it has gotten to stage 3. I have described the specifics of my Hidradenitis suppurativa in my previous article. However, there are a few things I would like to go into in regards to patients and society.
The awareness of Hidradenitis suppurativa in today’s society is minimal, which makes living with HS that much harder. I kept HS to myself and within the family throughout my years, as I am well aware that people have a hard time understanding matters which they themselves have not lived through. As those around me worried about pimples and some extra fat, I was concentrating on ignoring the agonizing pain. On days when my reflection in the mirror didn’t remind me of my disgust towards myself and that even my body has turned on me, I told myself that it was no big deal that I can’t wear something like others or can’t go out like everyone else.
Ordinary days are seen as boring to some, and a blessing to others.
During really bad days, it was hard to even look in the mirror or at my skin. You feel betrayed by your own body and ask yourself ‘why is the one person you cannot distance yourself from, is the person that seems to be so hell-bent on working against you’. I’d give myself a moment to feel bad and then would focus on finding a solution. Because there is always a solution, out there, somewhere.
Many doctors were seen, and all sorts of treatments were tried and tested. The only options I refused to be a testing subject for were retinoids, chemo, and immune suppressors. I grew up with Hidradenitis suppurativa and always saw it as a puzzle to solve. After many years I even came to a point of accepting it as part of who I am.
HS and support groups
I never felt the need to join support groups for Hidradenitis suppurativa. I was lucky to be surrounded by family and relatives who are all doctors. However, I am aware that not everyone with HS has such a support system as I do, and they seek others who understand what they are going through. The only time I joined support groups, was when I published my article on the incredible results I experienced after 3 months of bacteriophage therapy. I was truly shocked to have had some administrators bluntly attack me for even suggesting that there may be a solution to help patients with the pain. I then noticed that those administrators had previously posted many posts on the newly released immunosuppressant. For those who are unaware of what immunosuppressants do, it’s simple. They literally shut down your immune system to stop your body’s immune system from reacting. In the case of Hidradenitis suppurativa, it is said to help with the inflammations (since inflammations are your body’s way of reacting to something). But let’s see this again, yes it may help stop your flares from developing, but what about all the other things your body becomes vulnerable to? Because yes, your immune system gets shut from defending itself even from a common cold.
Shortly after, I also found out that it is common practice for pharmaceutical companies to make contracts with administrators and those who speak and represent large groups of patients, to agree on promoting their products in exchange for financial support. This goes even deeper; however, I won’t go into the details of just how low people go to make money for another’s suffering. If you want to see the reality of the situation, follow the financial interest of those involved. It will give you a clear picture of why they do what they do.
I do not claim that all support groups have tainted participants, but please, for your own sanity and health, remove yourself from any unnecessary negativity in your life. I, as a patient with HS, can openly tell you that you have a lot on your plate as it is and you don’t need to be surrounded by people who are taking advantage of your pain to sell you a product or those that are constantly reminding you of just how tough your life is. Keep in mind that you, as a patient should keep searching for options. Most importantly, Hidradenitis suppurativa is very different from one individual to the next. Do your research, weigh your options and do what you feel is right and not something that another tells you. It is your health and ultimately your quality of life that you alone should decide for.
Bacteriophages and my HS
After almost 20 years, I found myself at a crossroads between going for a treatment that has been commercialized and a treatment that has been pushed to collect dust after its discovery over 100 years ago. The commercial option was a biologic going by the commercial name of Humira. I wasn’t keen on going for this option for my Hidradenitis suppurativa, because frankly speaking, you don’t need a PhD to know that taking a TNF-alpha blocker, responsible for inflammations wasn’t much of a solution with something like HS and sounded more like a last resort rather than an option to opt for.
Physicians may have the knowledge of the science, but it is the patient that pays the price.
It was time for me to take a different approach and without much doubt, I opted for bacteriophages. Now, just over a year since my first intake of phages, I can write about the state of remission I am in and tell you what the past year has been like.
In short, a bacteriophage is a type of virus that kills a specific type of bacteria, causing no harm to any other being other than that specific bacteria. May I begin by saying that we are surrounded by bacteriophages. They are everywhere, in the air, water, soil, basically everywhere. Not only does a bacteriophage target a specific type of bacteria, but they also help our immune system to restore itself with their immunoregulating effect. It is important to note that our bodies are used to phages and do not view them as external entities that cause harm.
HS remission with phage therapy
As I mentioned earlier, my family and relatives come from a medical background. Back in their youthful years, they studied bacteriophages and knew of the Eliava Institute in Tbilisi, Georgia. When one of our relatives mentioned that it was still operational and seeing patients, we jumped at the opportunity to try out the phages.
A family member was flying to Malta from Georgia and we decided to send them to the institute to find out more about their phage therapy. We had spoken with the doctors at Eliava regarding my case, and they were not surprised to hear of Hidradenitis suppurativa (unlike the majority of doctors I have come across). They also had mentioned that the best course of treatment was to have me come in and they would take samples to run tests and see what bacteria are present in the flares. They would then be able to assign specific phages for me to take to help with the inflammation.
Since I was not going to be in Tbilisi any time soon, we asked if I would be able to try the general phages in the meantime. This general therapy was accepted and I was given the PYO and Staphylococcal cocktail phages. They were chosen as they contain bacteriophages against the most common type of bacteria found in infections. Although they didn’t have my samples, I didn’t want to waste any more time, so by the method of elimination, it was decided to go for the most common.
Hidradenitis suppurativa HS remission & phage therapy
I will continue sharing my experience from where I left off.
Month 4 +
Month 4 after taking the phages I noticed the appearance of 2 isolated flares. Unlike the normal duration of the flares (which was weeks and sometimes over a month), these seemed to have come and go within days. What was interesting is that their presence was with the absence of pain. From the 2, only one had opened, when normally all flares would open.
At this point, I had changed my intake process by switching the water and soda mix to taking phages either half an hour prior to food intake or 2 hours post food intake. I also started to apply bandages with phages directly onto the open flares, to maximize the chances of the bacteriophages getting to the site where the appropriate bacteria were located.
Month 6 +
By month 6 I noticed that the phages stopped being as effective as before. It is common due to the fact that bacteriophages attack specific bacteria and the decrease in one type of bacteria can create room for other bacteria to develop. As a result, the patient needs to switch around to a different phage treatment. Since I still could not get a local doctor to run proper cultures to determine which bacteria was now causing the inflammation, and I was nowhere close to getting to the Eliava phage center, I needed to make other changes.
HS remission & intermittent fasting
Coincidently, I had come across some research by Dr. Yoshinori Ohsumi, a Japanese cell biologist, who was awarded the Nobel Prize for his groundbreaking research in Autophagy back in 2016. This is the science that has led to the Intermittent fasting concept many may have heard of.
No one can possibly know a patient’s individual condition better than the patient. Why? Because their condition is not simply a word in a book. It’s their life. They live with it. They know every aspect of their condition personally.
I instantly realized that since I was not able to get a clear picture of the inflammation situation any time soon, it was the perfect time for me to battle not the symptoms of Hidradenitis suppurativa, but aim at fixing the cause of it. Many have mentioned that Hidradenitis suppurativa is linked to our immune system and mine has given up on fighting my inflammations many years ago.
I began the 16/8 routine of Intermittent fasting and have not looked back. This routine helped me not only with my sleep, concentration, appetite and rid me of my panic attacks (a fairly recent development), but it also got my body to recognize that there was something causing the flares to appear in my body. I had the occasional, painless inflammation here and there, but one thing that came along with them was something I haven’t had for many years. My lymph nodes became enlarged prior to the appearance of a flare. This, as many say, is a sign that my lymphatic system was once again recognizing foreign entities that were not meant to be there, which meant my immune system was finally waking up again.
Current Hidradenitis suppurativa (HS) remission state
When it comes to a condition like HS, remission is something one dreams of. Patients rarely look so far as asking for a cure, but simply finding ways to cope with the symptoms is seen as a blessing. Every little bit that helps ease the pain, discomfort and allows HS patients to experience that ordinary type of life is something each patient hopes every day will bring. Such days are counted and each HS patient wishes for those normal boring days to extend to as many days as possible. That is remission for a patient with Hidradenitis suppurativa. That is my HS remission. To get as many ordinary, boring and normal days as possible.
It is your responsibility, as the patient, to do the research, ask opinions and carefully weigh out the odds. This is not a car, house, or job we are talking about. This is your life.
Today, my HS is in remission and I am keeping up my 8-hour Intermittent fasting routine. I don’t know how long this state may last, but I am taking the remaining phages I have whenever I have a flare and also applying phages directly onto the HS flares. The inflammations barely ever open, so I found that steaming the skin and allowing the pores to open, and then applying the bandage with the phages, helps increase the chances of the phages getting to the infection site. However, since my Hidradenitis suppurativa is stage 3 and I have deeper interconnected tunnels, in some cases no amount of steam will help the bacteriophages to get to the location.
My plans are now to finally get to the Eliava phage center and run all the proper tests and determine what is the current dominating bacteria in my inflammations. The general bacteriophage treatment has done more than any other treatment I have tried. Phage treatment coupled together with Intermittent fasting helped me not only regain some control but more importantly, they have helped me understand my body better. The next step is to get all the proper workup done and to continue my journey exploring bacteriophages and helping my body get back on track.